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August 20, 2007

Left Of Center

If you want me,
You can find me
Left of center off of the strip
In the outskirts and in the fringes
In the corner, out of the grip

- Suzanne Vega with Joe Jackson from Pretty in Pink

This song keeps going through my head these days. I often feel that I am on the outskirts, on the fringe. I am not really a writer, yet I am a blogger. I am a SAHM but I also understand the working mother perspective from, among other things, my time spent at my parents' day care. This feeling of being in but not really in, of sort of hanging out on the edges, has been a running theme for most of my life. I am used to it and, for the most part, am comfortable with this position.

I can apply this analogy to all sorts of things: Being smart, but not super ivy-league worthy smart; being attractive enough, but not beautiful; having enough money for the decent house, but not enough to go on Disney World vacations and such; being part of the neighborhood groups but not the leader or go-to person; being in a sorority but not the A list one; etc.

The good part about being on the outskirts is that you don't get
labeled. You aren't stuck in one place or another. I like this
because I can be friends with the cool girls and also the geeks. Flow
from one group to another. Be involved one day and not expected to be
another. I am used to this.

Enough about me, though. The point of this post was to explain how Scott is the one on the fringe. He is not Autistic nor is he completely NT (neurologically typical). He doesn't qualify for the label special needs but he does have some needs that are special. To most people he probably appears normal (I hesitate to use that word, knowing that it is relative). His issues are not bad enough to warrant an IEP and special instruction from school. But. There are still things that are there. Things that we see that others may not, or may be interpreted differently.

Sometimes we just get used to the way things are. We give Scott a cloth napkin and things to chew. We listen to him talk endlessly and rub his back. We usher him away from his sister and let him throw balls against the wall in the basement. We hope for few changes or disruptions. We stay mostly to ourselves.

Last week we went to Scott's original OT (who now knows about this blog and has read some of it, yikes!). She hadn't seen him in awhile, over 6 months, and was impressed with the progress that he's made. But she was also concerned with several things. His inability to form letters quickly from memory. The obvious change in his alertness from when he arrived to when he was done with the session. His excessive throat clearing.

She e-mailed me about these concerns so as not to talk too much in front of him. I felt badly that I hadn't been better about working on his writing and helping him to self-regulate this summer. I do some things, but it is difficult to fit it all in, especially when he isn't exactly willing. Sure, I had noticed his throat clearing and yeah, I think it is a sign of his anxiety, just like how he has been chewing his clothes more lately. But he's also doing so well, weathered so many changes, been able to control his temper and mood swings better. To anticipate what might make him anxious and to maturely realize that it is temporary or to make adjustments that help himself.

So, I guess I forget a little bit about the other stuff or choose to look around it. Of course he's more anxious, he is about to start full day school. I'll bet there are few kids in his situation who aren't a little out of sorts now. Who may be acting up or overly needy. How do I know what is expected and what is too much?

We went to see a good friend and her boys last Friday (hi tac!). When the kids were playing together I felt slightly nervous. I know that my friend understands Scott's issues and has had her own difficulties with her kids, but it is hard to know what will happen and how his actions will be perceived. We do not have many play dates and also do not visit with people a lot. Scott has problems negotiating social situations and can either get wound up and destructive or pitch fits. I get worried that he will do something wrong and feel terrible, hurt someone or break something. He gets so excited and is then disappointed with what happens. It seems like more than he can handle.

The visit went pretty well. There were times when he couldn't stop himself and lost control. He knocked over some stuff and wouldn't eat the lunch because the wet food touched the dry. He was upset later that he couldn't ride the scooters like the other kids could. Maybe he could if he had more practice or maybe this is a motor planning thing that is too difficult for him. Hard to say exactly.

I remember when I first called the Parenting Consultant about Scott's pooping issues (months before we knew about his SPD) and, after explaining the current problem, she asked me if there were any other issues we needed help with. Well, no, nothing out of the ordinary, I said. I mean, sure he can be difficult, but isn't that just the way kids are? I felt that whatever trouble we might have with him was par for the course. Kids are trying. I could read books and consult with friends. Why would I need anyone's professional help unless the situation were desperate?

That summer of 2005, when Scott was 4, was when I began to see that he was more than just a little difficult. Since then I have come to view him as extremely complex. His actions often being dictated by the way he senses and experiences the world around him. And, maybe just as often, he's completely normal. A bright, curious, slightly anxious, energetic, six year old boy.

He will be starting first grade in two weeks. He will, no doubt, have some trouble adjusting. He is concerned about being away all day, about wanting to tell me things and not being able to remember them. About lunch time and all the unknowns. He will be reading and doing math at at least a grade level above most of his peers. He will not be able to write or draw as well as most of the children. He will probably get tested for the gifted program where he might qualify. Most likely he will be right on the edge, like his mom, who squeaked by at a 130 IQ (my parents loved to tell me this to keep my ego in check). He is smart but not a genius like these kids.

I can drive myself crazy trying to decipher where exactly he fits in. The right place for him is in both worlds. Somewhere on the fringe. Mostly OK. Not quite all the way. Often misunderstood. Needing extra assistance sometimes. Ahead of the game in other ways. Smart and athletic while also socially immature and physically awkward. I am sure he will be able to see that his place is in between. Hopefully, he will learn how to move fluidly from one group to another as it suits him. And to feel good about being a little left of center.

Comments

It sounds unkind [and I certainly don't mean it in that way] but I sympathise with children and parents that fall between the cracks. I don't know how else to phrase it, but you certainly have my sympathises, many of the difficulties with none of the help and support.
best wishes

Lori-
Hang in there-I know it's hard. Dallas had adjustment issues in both Kindergarten and 1st Grade. He is going to be fine and you are a great mom! And you are pretty and smart and all that good stuff :)

Hi Kristen - Last year, in Kindergarten, Scott did receive school sponsored OT. He didn't qualify for an IEP b/c his issues didn't fit into the designated categories (things that are in the DSMV), but they were able to help him through a PA loophole called a 504 agreement. At the end of the year they re-tested him and determined that he does not need any more special accommodations.
Part of the problem is that he is meeting (often exceeding) all the "no child left behind" measures. It is the old story of not being bad enough to meet the "special needs" criteria.

And, yes, he does sound so much like your son, who I know will also be starting 1st grade. I am so glad you are blogging too and that we found each other!

Lori, I'm curious as to why Scott doesn't qualify for extra support from the school district? From what you've posted here, he sounds a lot like my son, who was originally diagnosed with SPD and then eventually PDD-NOS.

So much of what you describe here is the stuff that keeps me up nights. We are also about to start 1st grade (a full day) and yes, the writing, the fine motor, lunch time, the long day...I'm with you. It's daunting.